Tired, Vulnerable & Even a Bit Strong

Last month was the first time since I started this blog that I didn't post. It's not that I didn't write something; I did. I just couldn't bring myself to hit "publish."

And I know the reasons why: fear and fatigue.

The waiting game we continue to play is wearing me down. I started my last post on Feb. 11, just one day before Josh's last appointment. I was so worried and so mentally exhausted that I just never went back to finish it. I wanted to run away from it.

(Before I go any further, I'll tell you that Josh is doing fine ... for now. Overall, it was the best news we could have received - because the phrase, "Josh will never, ever have to have surgery again" is not the reality. The numbers they watch have continued to rise (not good), but he's not in a danger zone yet. He has an MRI in June and then we'll see what the truest numbers reveal.)

It was also Heart Month and his appointment - very unintentionally - was smack dab in the middle of CHD Week. Because of course it was. And like anyone who has a particular interest in something with any type of timeliness, you can imagine all the images and stories I was inundated with via social media that week. Heck, even I started off the month stating that I was going to post a stat and/or information on CHDs every day. But it just became too much. It was overwhelming.

By the time Josh's actual appointment came, I was burnt out on focusing so much on this part of his life - the part I can't kiss away or throw a Band-Aid on to make it better. I cried on the way to get Josh from school and put on a brave face as we went through the motions at his doctor's visit; it's now second nature. 

It wasn't until a few days after we received our good news that I started thinking, "Gosh, if you didn't know me at all, reading this blog, you'd probably think I was quite the Debbie Downer." Or, at the very least, you would probably think that this situation rules our lives. 

I'm here to tell you that it doesn't. For the most part, our little family of four lives your typical middle class life. The kids are tough to get out of bed for school; they argue; then they love each other; we go to baseball and gymnastics each week. Standard. Normal. Content.

However, having this blog is a sanctuary of sorts for me; I can air my thoughts, fears and dreams for my son. This one, terrible, horrible thing is the focus here. It's a spot of vulnerability for me. And for anyone who knows me, while I generally wear my heart on my sleeve, my spoken words - for the most part - are never quite as raw as anything you'll read here. This is my safe place.

Even if you decide it's too much and don't come back, I'll continue to write. It's my therapy and expression. I know I am strong - though not as powerful as my son. But I may also be sad, and happy, tired, angry, resentful, relieved, devastated, positive, negative and anxious. I will be human.

Taking a break and now looking back at what I started to write last month (it's posted below), I actually think it's beautiful - because it's honest and raw. It's me. See for yourself.

----------------------------------------------------------------------------------------------------------------------------------------------------

Twice a year, Josh's "past" becomes our present. Every six months, we take an afternoon and spend it in the lovely confines of his cardiologist's office. He goes through the same paces each time: an EKG and echocardiogram. 

And then we wait. 

His doctor eventually walks in and lets us know if we've succeeded through another stay of surgery or if it's "time." I'll be honest. At this point, it feels like we're on borrowed time. After Josh's last surgery (at 4), doctors told us that they hoped he'd get to 10, maybe 11. Well, ladies and gentlemen - he's close to 10 1/2. Can't get much closer to that. 

So, once again, we are here. 

At just around this time -- T-minus 24 or so hours -- I start to feel that inner ick. A plague of anxiety that courses through my entire blood stream and brings out my inner mama bear. It also brings out my anger and fear.  

My emotions run the gamut: anger, fear, sadness, anxiety, protectiveness, strength, resentment.

However, I am helpless. I can't control what's to come tomorrow. Logically, I know that. But there's no logic in my heart. 

---